tv The Stream Al Jazeera April 11, 2014 12:30pm-1:01pm EDT
a state park. she says she will use the money to pay for college. it is the only buy hand producing site in the country that is open to the public. thank you for watching. i'm del walters in new york. "the stream" is next. >> hi, i'm lisa fletcher, and you're in "the stream." america is full of silent warriors, you may be one of them, and people have no idea what they're going through. injured veterans, making themselves far more vulnerable to bankruptcy and mental illness.
>> my cohost, rajahad ali is here, and he brings in the social media in the show. 5.5 million caregivers focusing on injured veterans, and they say there's no support in the system. and that's what they need. >> who is helping those who help others? these silent warriors, like you mentioned. and we have so many great personal stories coming in from social media today: s this a cost, time, career, relationship, usually for love. a huge sacrifice. these are the unsung heroes of america. >> they are, they're sometimes called camouflage caregivers.
millions of americans who pick up caring for an injured family member or friend or acquaintance. millions of people providing care for wounded soldiers from iraq and afghanistan. many of them are waging their own struggle against mental illness as a result of the enormous stressors. more than half of them are not under 30, and in young marriages, which can lead to stress. here to explore the lives of these hidden heroes, john shah, the ceo of the caregiver action network. the country's largest network for caregivers. and a fellow with the elizabeth dole foundation, and the wife of a wounded warrior, so john, we're talking about a huge number of people. 5.5 million people caring for veterans, and as we started to do this show, we were all shocked to learn that the number
was so huge. how does this manage to stay under the radar? >> yes, we didn't know how many were out there, and especially how many caregivers carrying for loved ones from post-9-1-1. and i think that's one of the big headlines. now, what has happened is so many more warriors have been coming back from the iraq and afghanistan wars with injuries that in previous wars they would not have survived and that's why the numbers are so high. >> it's interesting that the numbers are so high, but they don't have that much visibility until the elizabeth doll study came out. we know that the veterans are suffering, but in a very quiet way, those shouldering the burden of care are suffering as well. your husband suffered a very serious head injury in iraq in 2014, and will you share the struggles that you have and why? >> certainly, and i appreciate you having me here to share my
story today. in 2014, when my husband sustained a gunshot wound to the head and survived, he normally would not have survived that type of injury if he had been injured in a previouseer ar war. it creates struggles for him, but also for myself. i stepped up to the plate willingly and gladly. i did not realize at the time exactly what i was stepping into. i didn't realize that i would go nearly bankrupt, because i originally gave two weeks notice to my job that i would need for vacation, and that turned into ten years. i used to make a very reasonable salary per year, and i have since left the workforce in 2007 when it became very apparent that i needed to care for him on a round-the-clock basis.
>> did it effect things like how well you slept or how you were eating? just the basic things in life. >> his sleeping patterns are every two hours around-the-clock, so i sleep when he sleeps, and that's very stressful to not get proper sleep, and also because you're caring for somebody else. around-the-clock, a lot of times you're the last person you care for, so you always put your needs last. so not eating right. and not sleeping right, those are very very common side effects of care giving. >> if somebody has experienced severe financial stress, it's a completely and enormous distracting thing in life. and when you experience something physical with a loved one, a physical injury, that's stressful. and you have all of these things happening at once, and what does that do to you mentally? do you feel like you're going to have a breakdown? >> i had a couple of breakdowns and i sought treatment. but it was not the right kind of
treatment and it wasn't effective treatment. this was six or seven years ago, and i really didn't get the right kind of help that i needed. so yes, caregivers of post-9-1-1 veterans have four times more times the depression than the standard community. and this is an epidemic, with the social services lacking and we need to step up and improve and expand the services. >> paula says:
okay, john, there are millions of these camouflaged caregivers and why are they suffering in silence. >> because when you get thrown into that role, you feel isolated. you feel by yourself. though there are millions in the same spot, when it happens to you, it's overwhelming and you feel isolated and alone. no one is born knowing how to do family care giving, and you don't really know where to go for resources and you don't think to go on the internet googling, i'm a caregiver, and what's in it for me? but there are resources available, and it's important for people to realize, you can get help and reach out to that. >> john, do the stressors varied among the caregivers depend on the era, the war that the veteran was part of it. >> they certainly do. and it's quite
interesting. that caregivers from post-9/11 are much more likely, for instance, to be uninsured themselves, and when you think about the toll that it's taking on their health, there's a much more high incidence of depression. >> there has to be an incident with the aging population, back in korea and vietnam, the people carrying for these folks are probably getting up in years. >> yes, 10 or 15 years down the line, because everybody is living longer in america, what happens after 15 years when the caregivers are now stressed out, worn out, burned out, then who takes over the care giving role, and that's going to be a huge
issue, especially for the post-9/11 population, we have people who are going to be around for 50 or 60 years, for the caregiver, thinking about unimaginable. >> tory, how do you cope with that? you're still young, and you have about. >> i have decades of care giving ahead of me, and most typical, it's usually the end of days or during an illness that is going to result in the eventually death of the one that you're caring for, but whereas with my husband, we have a lot of years ahead of us, and i won't be able to contribute to my own retirement by joining the workforce, i know that i'm in for the long haul, and i'm prepared to do that, but i also need to have support. not only for myself, but that would enhance his recovery process and care as well. >> we have more
caregivers: so tory, if we had a military representative onset today, what would you ask them? what initiative or program could they create to help support caregivers like yourself? >> well, i had the pleasure to be to be on capitol hill and be present when senator patty murray introduced what's called the military and veteran caregivers serves improvement act. this is a huge step in the right direction. it was a bill that was introduced today and i hope to see it go through and be approved. but it's going to build the caregiver omnibus act. and it would expand to include all caregivers. right
now, it's only post-9/11. and it's incredibly unfair to all of the veterans, and it releases a lot of the restrictions as to who is even qualified to be a caregiver. a lot of the programs require that you be married. what do you do if it's the sister or the mother or the brother or the neighbor down the street? this addresses a lot of those unmet needs and things that we didn't think about originally that we need to address now. >> you're no stranger to capitol hill. and you've been a powerful voice there for a decade. while the wounded veterans grapple with their challenges behind the scenes, across the board, diagnoses life altering for the patients and life-changing for their entire families, and wait until you hear what this equates to in dollars and cents. it's shocking.
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who care for an adult loved one, and a lot of perm stories. >> hannah says: joining us now is a family caregiver whose mother has alzheimer's, and cofounder of lots of helping hands. your mom was diagnosed with alzheimer's at 50, and you were in college and your brother in the 8th grade. and how did your diagnoses and subsequent care giving alter your life. >> it was definitely life-changing, i would say. it began with my mother hiding plants in the closet. and after that, it progressed until the point she couldn't
walk or talk. and i ended up taking off a year from work to be able tore care for her. it was both rewarding and challenging. i've never had a job that was as demanding, and yet as fulfilling being muslim and south asian american, i think that it was really difficult to find, and being able to care for her in her home is most suitable and appropriate. and she's there with my family right now. >> torre, in listening to sadaf, the need to not make what she has gone through the center of attention. and i wonder if you come across that with a lot of caregivers that, because they are so caring in nature that they're not going to stand up and say, i need help. this has been so hard and that's affected my life across the board.
and it seems they're very reluctant to say that because they have such big heart. >> absolutely. i have had the blessing of being in contact with thousands of caregivers over the years. and hearing their stories, and helping them share their stories, and it's a universal message that i'm hearing, yes, it's very difficult. and like she was saying, it is also a blessing. so we do see the hope and inspiration that comes from it, and we see the blessings, and we try to have faith and so on as part of that process, but it is very very difficult. and when you have the collective voices of so many thousands that are stepping up and saying, i thought i was the only one, or i didn't realize that there were others just like me, when you hear that, that becomes a very powerful statement. >> john, as a society, we don't really place a value on the tens of millions of caregivers who
are working for free, there a dollar figure associated this? >> actually, there is, we had an economist try to put a value on that. and he came up with $450 billion a year. >> a year. >> and to give you a sense of how big that is. if you take all of medicaid spending across the states, it's not that much. $450 billion is twice as much as we spend on all nursing home and in-home paid care combined and it's almost as big as medicare itself. >> and we have more caregivers, elizabeth rose, my sister and i cared for our late mother before she died. we had therapy and church, and each other. , we have a great video comment. >> care giving is about more than healthcare need, it's a relationship with a life history that changes dramatically within
the context of day-to-day fend see. it takes a particular kind of energy to maintain a positive outlook for your loved one, and this can be exhausting. eventually you can feel overshadowed when your personal goals are pushed to the background when you try to keep everything balanced and all giving. >> i want to bring you into the conversation, you're the ceo of helping hands, and is there one issue that disproportionately concerns caregivers in america? >> the isolation, and the fact of being overwhelmed. and how am i going to respond to the change in our family's situation now that we're doing this care giving situation. >> is there one illness in particular that takes up the disproportionate amount of time and effort for so many caregivers? >> i think that alzheimer's is usually referenced as the
illness where the caregivers are dealing with the greatest number of issues for the longest time. that and the caregivers for wounded warriors which is the study showing more than the war has made that much more difficult for the family. >> sadaf, you've been in this for a while, and your dad is one of the primary caregivers for your mom. and there are a lot of people out there who want to help, but are they helping in the right way? or are you discovering that there are big gaps in filling needs for families like yours? >> i would say that filling gaps, and the alzheimer's foundation, which i'm a volunteer for, are on the right track, and what would be great is if there were more efforts to address racial and ethnic
disparities in healthcare and respite care for caregivers, and i would say for someone like myself who is young, attention to the fact that the disease impacts not just the person, but also the family, as well as it's not just an aging disease, but also something that impacts people who are younger, 35 and younger in the millennial generation like myself. head much. >> there's no question. it's one of the big surprises in family care giving, and you think of it as just caring for the elderly. and that's not the case. we're seeing so many more millennials who are now family caregivers themselves and a lot of children. alzheimer's is exploding ex initially, but so is autism in children, so there's this
tremendous demand for family caregiver services. >> we were looking at a lot of very credible organizations, and they had such a wide ranging number in terms of the number of people care giving for adults and children in the u.s., 67 million. >> i would say that the number is 90 million. and i'll tell you where the numbers are coming from. the rapid corporation put together a and there are things that the family caregivers need to use. the numbers came from 2009, and it has been now that we're able to update that, going into 2014. where a few research centers said that 39% of all adult americans identify as family caregivers. >> amazing, coming up, we have
heard even the groups that wanted to help sometimes don't hit the mark, but millions of caregivers are finding a source of relief and community among strangers. >> i'm actually quite nervous... >> as u.s. forces prepare to leave afghanistan, fault lines brings you an eye opening look at what life is really like under the taliban. from girls attending school, to enforcing sharia law.
>> they rely on the local population, and so they need to win the hearts and minds of locals to be able to fight. >> then immediately after, an american tonight special edition, >> explain how you were able to get access to the taliban. >> fault lines: this is taliban country then, an american tonight special edition only on al jazeera america meric.
>> hi, i'm meric. sellas, and i'm producer and star of the human chain, and i'm in "the stream." >> welcome back. we're talking about the millions of americans who are full-time caregivers to a loved one, and how their sacrifices often affects their savings and wellbeing, how does lots of loving hands work. >> it provides an online service, coordination for online service, but allows what we call trend and colleagues, to come together more easily and provide assistance for challenges in time of crisis, and caring for ananing loved one. >> how do they do that?
they sign up and join online and see a group calendar and plug in when they can do what they can do? >> pretty much like that. usually a close family member will go to lots of helping hands.com and create a private community. they will then invite all of these other people into the community that know the family and are interested in providing assistance, and when those people get that email invitation, they can sign in with their own private password. and the first thing they see is a calendar of activities needing assistance, it might be dinners, rides to chemotherapy, babysitting, housekeeping. all of the activities that become a challenge in times of medical crisis or long-term care giving. >> social media, how does it help the caregivers we have got?
>> i'm chris with cancer support community. 5 million americans provide care for someone with cancer at home, the majority of whom are not prepared to take on the care giving role and experience serious stress as a consequence. this summer, the support community will launch the interactive online platform for caregivers to share their experiences, access resource services. and information will be used to give them next steps in research and policy. >> so as you mentioned in the ethnic community, you felt a bit of shame talking about helping your mother. and did the virtual community, if you will, give you that outlet of space and support? and if so, how? >> i would definitely say that the anonymity allows you to talk to other people about your private concerns in a way that perhaps you might not be as comfortable talking about in
person, but i will say that the muslim community was very supportive. my mother had an elevator to take her to the mosque and hear the sermon for friday and prayer, and i was able to accompany her. she's lucky enough to have a private duty caregiver, who is muslim as well to help her remember to pray, and i would say that i was inspired by my faith tradition to serve my mother because there's an islamic saying, where heaven lies at your mother's feet. and i will say that i have gotten that kind of support when i tweet and facebook about my mother and my care giving experience. >> tori, what's the danger of putting on a brave face day in release valve? >> it does not serve you to stuff your feelings and fears, and like she was saying, if you go online, you can address it anonymously, but you have to talk.
you have to share your story, something that i learned five years ago, i had to learn to speak my truth. and in the course of that, i got on social media and started sharing our story, and it developed into amazing friendships that have lasted to this day. i live in a very remote area, and wal-mart is 90 miles away, so just going grocery shopping is a major thing for me. but i can reach out to members of our community any time i need help. and in my husband's case, he has a home health aid that comes in through the week, and allows me to be able to take our younger children to the doctor's appointments that they need to go to. so the online community is an incredible resource, but you cannot stuff it or not share it. >> all right. thanks to all of our guests for a wonderful
conference. until next time, we'll see you online. welcome to al jazeera america, i'm del walters. these are the stories we are following for you. kathleen sebelius says good-bye to the white house and the affordable care act. federal investigators are trying to determine what caused the collision in california killing 10. an inane --